Home         Forums  

Go Back   Marrowforums > Treatments > Transplants
Register FAQ Search Today's Posts Mark Forums Read

Transplants Bone marrow and stem cell transplantation

Reply
 
Thread Tools Search this Thread
  #1  
Old Mon Nov 18, 2013, 11:39 PM
rainbows and glitter rainbows and glitter is offline
Member
 
Join Date: Nov 2012
Location: Alaska
Posts: 11
NIH transplantee looking for others

I had my transplant in October and I'm out but staying in the area till further notice. I'm on tacrolimus and prednisone (tapering). I was just looking for anyone else who may have also gone to nih for a transplant, or who was on tacrolimus? I am just looking for other peoples stories/opinions/experiences.
__________________
27 year old female diagnosed MDS RCUD 2012, GATA2, multiple carcinomas in-situ, SCT 10/03/2013 @NIH, chronic GVHD starting 11/2015
Reply With Quote
  #2  
Old Tue Nov 19, 2013, 01:56 AM
Tii Tii is offline
Member
 
Join Date: Nov 2013
Location: Los Angeles, CA
Posts: 22
Hello

I responded to one of your other postings the other day.
I am 11 months old, and got off tacrolimus last month. I had issues with it, as my body couldn't handle the full dosage, and then my liver had gvhd and had to balance cellcept with that. Tacrolimus made me shake a lot and the liver was not happy with it either, but didn't have any other side effects.

Where did you have your transplant done?

For this whole year that I have been a "bubble-girl", I too longed for other transplant "friends", I have since found two, and then few weeks ago found this site, and I attend all women's group, but there is only one transplant patient there. The leukemia group has few, and meeting them and talking with them has given me great hope to just move forward and believe that this works and one day I can be in their shoes. I returned to work in August and it sure is nice to be around people

Please do ask any questions you might have. Everyones journey is different, but the feelings and concerns are pretty much the same.

I wish you all the best, keep your mind pre-occupied with positive things and soon you will notice how your life has changed, for the better.

Tii - 37yrs, MDS
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
NIH Trial (Eltrombopag & Cyclosporine) disco3md Clinical Trials 0 Mon Jun 26, 2017 06:02 PM
NIH AND Dr Neal Young Relentless Against SAA Bone Marrow Failure 7 Mon Mar 31, 2014 05:40 PM
Contacting NIH, and other Questions David M Questions and Answers 8 Sat Jul 10, 2010 05:04 PM
Help Needed to Preserve NIH Funding in Economic Stimulus Bill Marrowforums News and Events 0 Thu Feb 12, 2009 03:05 AM
AA Specialists in Florida?? us6inks Your Local Area 4 Mon Sep 1, 2008 04:03 PM


All times are GMT -4. The time now is 12:50 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org